MEDICAL MEDICAL RESEARCH RESEARCH
Lived Experiences The key to research success
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by Leanne Stalker, PhD and Paul St. Germain
Every individual living with kidney disease takes a unique journey. The lessons they learn, the experiences they acquire, the impact on their lives and those around them, provides a perspective that those who aren’t affected and haven’t lived it, cannot fully understand. It’s for that reason that patient‐oriented research, which involves a greater engagement of people living with kidney disease, has been prioritized in recent years. 18 / Kidney Living / Spring 2022
he Kidney Foundation of Canada research program is patient‐priority‐ focused. Our research decisions are always made with patients top of mind,” says Dr. Leanne Stalker, Director of Research at The Kidney Foundation. Recognizing that patients, caregivers, donors and those directly affected by kidney disease, come to the table armed with their own expertise, has provided huge value to research programs. Research programs and patient‐oriented research networks, such as The Kidney Foundation of Canada, Can‐SOLVE CKD, and The Canadian Donation and Transplantation Research Program are helping to bring patient‐priority to the forefront of kidney disease and transplant research design. Organizations provide support and training to help patients become engaged and empowered in the research system and training for researchers on how they can integrate lived experience into their work and make research more accessible to the community. “The need for a lived experience viewpoint has been recognized, and research programs have increased the importance of patient engagement in the process, as well as emphasizing focus on knowledge dissemination and communication to the community,” says Dr. Stalker. Lived experience partners provide invaluable insight at all phases of a research program. This includes helping to decide on program and funding focus including acting as peer reviewers, participating in individual study design, and contributing to research grants and publications. Their individual experiences are helping to shape the future of kidney research, from molecules and kidney.ca
